Peer advocates supporting older people affected by cancer

The diagnosis of cancer was incredibly difficult for him to come to terms with

This year’s Volunteers Week is 1st to 12th June and we’re recalling stories from some of our amazing peer volunteers. In today’s story dating from 2014 we hear from Bob, a volunteer peer advocate with Dorset Macmillan Advocacy. Bob supported Brian who was diagnosed with Myeloma:

Brian is very intelligent, friendly and outgoing with a great sense of humour. He can no longer drive and is in constant pain of varying levels and physically weak. He can only walk a matter of yards with the aid of a walking stick or frame.

He lives alone in a small communal block of flats and when I first met him had extremely low self-esteem. Although previously very well-travelled and active he felt that he had few future prospects of a happy life. He found his condition very hard to accept and suffered bouts of depression and often became upset when speaking about his situation.

The diagnosis of cancer was incredibly difficult for him to come to terms with. Even though in remission when I met him, it was still hard to bear. He still has a few good friends but is no longer independent so cannot socialise as much as he would like. He spends most of his time in his flat watching TV.

Brian’s cancer is now inactive and in remission for 2 years. He has regular appointments with his consultant and GP, both of whom he has a great deal of respect for. He speaks very highly of his current medical professionals. A variety of pain relief drugs have been tried and the latest drugs give relief for 12 hours each day as a maximum dose.

He sometimes becomes confused and forgetful. He has sometimes taken the wrong drugs or has forgotten to take them leading to potentially very serious problems. These have included passing out and hallucinations. I was present at one of these events. I’ve spoken to his nurses, doctors and consultants for his safety when he has taken incorrect medication.

Brian always speaks openly and honestly to me and we have a very good relationship. He knows that I understand him, will help him where ever I can and that I will never impose my views on him. We explore options to overcome problems or achieve things he wants to do. He loves to have a laugh and a joke too and not always to be reminded of the negative side of his situation.

I’ve arranged a bus pass, trials of motorised scooters, membership of the Myeloma Support Group and taken him to a meeting to introduce him. Whatever information Brian needs I source and provide it. Brian is able to speak up for himself. He did have an issue regarding his pain relief when in hospital. He decided not to take this further although I explained what the process would be to make a formal complaint.

Bob

Brian’s image of himself is now far more positive. He smiles more and we laugh and joke more than he used to. He has started to socialise more and is keener to “improve his lot” and not just accept his current situation. We have made a “bucket list” for 2014. I will help him achieve the things he wants to on it and help him make a list for 2015 too.

Brian is much happier to use aids such as motor scooters and walking aids than he used to be. He used to say that “only old people use those” (I have convinced him otherwise). Brian says he looks forward to our visits and really values them. He didn’t regularly contact his friends but now has an item on his bucket list to do this fortnightly. Several items on his bucket list show a massive improvement in his outlook. He will question his pain relief regimen himself now to gain improvements and changes.

When I met him at first he said “I am no longer any use to anyone. I will never have another relationship with a woman.” Now he says he looks forward to me visiting and having talks with me and he feels more positive about himself and he’s happy with his “2014 bucket list”.

Bob’s view and Brian’s story can be found in full in our publication Every Step of the Way which can be accessed here

Blog Stats

We've published "Every Step of the Way": 13 stories illustrating the difference that independent advocacy makes to older people affected by cancer and "Facing Cancer Together": demonstrating the power of independent advocacy.

You can find and download pdf's via the "About Us" page. You can click on "About Us" on the top right of this page. Alternatively you can order hard copies free from Macmillan Cancer Support by following the same link as above.

We've now also published "Time: our gift to you", 19 volunteers' stories from some of our peer advocates and cancer champions. It can also be downloaded via the "About Us" page on the top right of this page.